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Vasculitis UK
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immunoglobulin replacement therapy

I have an immunology appointment on Monday with a view to me starting immunoglobulin replacement treatment as I keep getting chest and sinus infections. My low immunoglobulin levels are caused by rituximab. Has anyone had this treatment? did it work? are there any questions I should be asking the doctor at my appointment?

Many thanks

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Hi I haven’t had it but I’m in the same boat as you where I will eventually. My Prof isn’t seem really concerned when he mentioned it so I wouldn’t worry too much about it. Just ask the normal questions like is there any side effects initially, do you need to take any precautions like stay away from infectious areas and so on. I’m sure he will tell you all this and give you a leaflet.

Let me know how u get on and good luck I think a lot of us will b in this situation sooner or later due to Rituximab sadly xxx

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Hi Alpsy

I had my appointment yesterday and was given a couple of vaccines against bacteria that I have low antibodies for. I know that I have had these vaccines before so I'm not hopeful. My case now has to go before a board review to decide whether I need the replacement therapy.

Good luck with your treatment.

Jackie

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Gud luck Mooka! I hope it all goes well xx

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Hi I have GPA & have been having immunoglobin replacement therapy for 18 months as a result of Rituximab & picking up repeated infections. I go to Addenbrookes for their decisions/reviews but have the treatment locally. I started off having ivig infusions every 3 weeks in the local hospital. There were others having immunoglobin replacement therapy due to other conditions. It usually took about 4 hours. I didn't have any reactions to it. Recently Addenbrookes suggested that I try to do the treatment myself by sub cutaneous injections at home on a weekly basis. The benefit is that the immunoglobins stay in your system & you don't have to spend time in Hospital every 3 weeks, but it isn't for everyone. If you have ivig, by the third week, it is reducing in your system so it continually needs topping up.

Good luck Sue

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Thank you sue. This is most helpful. It would be really good if I could have this done at my local hospital as I have a 120 mile round trip to addenbrookes. Have your infections stopped or just reduced? Have you been able to resume/carry on with rituximab? Good luck with the sub cutaneous injections if you decide to go ahead with them.

Jackie

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Hi Jackie yes I understand about the travelling as our round trip is 360 miles to Addenbrookes. However it is worth it for their expertise & they are very understanding about trying to get you the treatment nearer.

My infections have reduced & I have not had to have any more Rituximab though I have been told I can have it again if any more problems. Incidentally as I have lung damage I see the resp consultant there & he said they have found that having the IRT also may keep me in remission. Apparently they can treat flares with larger doses of IRT!

I have started the sub cutaneous injections(sorry I didn't make it clear) I am managing & the latest iGg levels show up as being well within the normal range. There seems to be different makes of IRT. I had Flebogamma in hospital but at home it is Hizentra. By the way, Hizentra do have a video online showing you how to manage it but maybe leave this till later. Sue

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Thanks Sue this has been really helpful. I also see the respiratory consultant at addenbrookes and he was the one that referred me to immunology. The vas doctors seem keen to get me back on rituximab so it will be interesting to see what happens.

Pleased to hear you are getting on okay with the sub cutaneous injections Thanks jackie

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Hi susan. I’m 64 and in care indefinitely @ addenbrookes for primary SLE (infant onset, inc small vessel vasculitis) + various other comorbidities inc PID CVID (hypogammaglobulinaemia G,A,M) under Immunology, rheumatology, gastro, gyn onc, ENT etc....i’m devoted to addenbrookes: the care i’m getting is wonderful

My history of below range Igs started way before daily combined therapy immunosupression treatment with hydroxy + mycophenolate + pred began, and no changes have been made to my meds since immunology took me on several years ago.

So far immunology is managing to damp down my tendency to complex persistent Multisystem infections and my history of chronic pockets of bacteria driven sepsis via daily antibiotics indefinitely. I’m told I’ll go on IVIG if infections breakthrough

I wonder if you’re willing to say:

How below range did your IgG results fall?

Did you have other below range Igs?

How often are your Ig levels checked?

Thanks

Coco

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Hi Barnclown

My ig levels have been checked regularly this year (probably at every appointment).

Lowest results are:

IgG 3.66

IgA .36

IgM .2

So all are low. I have been on antibiotics on and off since February, whenever I stop the infection is back within days and it is becoming resistant to some types of antibiotic.

I finished a two week course of IV antibiotics last Monday but think its on its way back.

I hope you can continue to control your infections with the antibiotics, you seem to have more than enough to contend with.

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Thanks v much jackie...helps me to keep my stuff in perspective...

Am v sorry you’re feeling infection returning..this sort of persistence is v disheartening. Courage

at the mo my chronic infections seem to be fairly well damped way down...and my results now are IgG 4.1, IgA .32, IgM .38

But i never count my chickens

Good luck on monday

XOXO

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Hi, I've been on it for nearly a year now, also because rituximab had completely knocked out my immune system. I understand many on ritux rebuild their igg levels over time but that didn't happen for me. I have an infusion of privigen every 3 weeks. Initially I was monitored during the process so it took about 2 1/2 hours. Now I'm just hooked up and it takes about an hour. The only side effect I've had is a bit of a headache but if you drink lots of water during the infusion it helps. I never suffered much from infections etc so haven't seen any difference there (I was given it because if I had caught anything my levels were so low I'd have been a goner) but many have remarked on how well I look since being on the treatment. I'm now waiting to hear whether I can self administer from home which would be much more convenient. I was quite reluctant to have the treatment initially but my fears were allayed - in particular about it being a blood product - by the consultant and now my experience. My igg levels are now normal by the way, despite having more ritux!

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Thank you. Do you think you will need to be on it long term or is there a chance you will be able to stop as your levels are normal? Good luck to you also with the sub cutaneous injections. It's not something I fancy doing but appreciate I will need to come to terms with it eventually.

Jackie

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Hi Mooka Ive been on Ritux since 2009 and IVIg since 2013 although I’ve been given high doses of IVIg Gold at earlier points when I’ve been very ill in hospital- even as early as 1998. They were life saving then. I think there is a clear link between Ritux over a long period and regular infections which is why Immunology invariably step in with combined IVIg treatment. I have it every three weeks at Addenbrooke’s. I have SLE by the way but also a history of vasculitis. Immunology are fantastic at Addenbrooke’s- you’ll be in safe and clever hands! Good luck on Monday x

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Thank you so much.

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Hi

I have been having IVIG every month for the last 18 months. I have a Vasculitis Neuropathy.

I am on also Prednisone and have finished recently other drugs including Methotrexate and Cyclophosphamide.

The IVIG has helped me greatly and with each month my Vasculitis is improving.

In australia it’s very expensive so I am fortunately covered and have this donated by the blood bank and government healthcare program. I hope this assists you

V

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Thank you for your reply. Its always interesting to hear how it works in other countries. Its good to hear that the IVIG is working for you, I still have a wait to see if I should get it or not.

Jackie

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